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Saturday, July 23, 2011

Isaiah 40:18-31
Do you not know? Have you not heard? The Lord is the everlasting God,
the Creator of the ends of the earth. He will not grow tired or weary,
and his understanding no one can fathom. He gives strength to the weary
and increases the power of the weak. Even youths grow tired and weary,
and young men stumble and fall; but those who hope in the Lord will
renew their strength. They will soar on wings like eagles; they will run
and not grow weary, they will walk and not be faint.

*click the highlighted words for more information*

Today I am feeling overwhelmingly blessed. I am thankful for cartoons playing a bit too loud, snacks spilled onto the floor, and suspicious giggles coming from the other room.

With the chaos of having two children and one with special needs sometimes the beauty of every day can escape me, but after this last week I am very aware of how blessed we are to have each and every moment.

We have been traveling down a winding road for the past two years trying to reach a diagnoses for Cameron, but we have been so fortunate to never have to encounter some terrible things that some have to face nearly every day.

This past Tuesday around 11:30AM Cameron had his first seizure ever. Words can not describe how terrified I was. Thank GOD Cody had come home for lunch which is a rarity. We rushed Cameron to the doctor where he continued having seizures and vomiting. He was struggling for breath and never regained full consciousness. An ambulance came and took us to the ER and Cameron's seizures got worse and more strong as time went on. They tried multiple medicines and nothing worked. His breathing was becoming more labored and his oxygen levels continued to drop. Finally, around 5:00pm or so they had to sedate and intubate him. We were absolutely horrified as we watched him lay lifeless on the table with the slew of doctors and nurses running through the room. Cameron had seizures from 11:30AM to 5:30PM without ever regaining consciousness. He was not asleep, just not there. His eyes were rolled back and he was unable to move at all except for the involuntary motions of the seizures when they would flare up.

Around 6:00PM they life flighted him to Scott and White Temple in a helicopter. They removed his breathing tube and after a while PRAISE GOD Cameron was breathing on his own and was looking around. He was very out of it after being on so many meds but I can't tell you the relief of seeing him look AT ME and not through me. We spent the rest of that day and the next in the Pediatric ICU and then our last night we were moved to a regular room. Cameron did have a lot of breathing difficulties the first night and remained on oxygen but the doctors believed it was due to all of the heavy medications that he was given earlier that day. It seems like we were in the hospital two weeks. I cant believe that this ordeal was only 3 days-it seemed like so much more.

So, now on top of his un-diagnosed white matter brain disease Cameron was diagnosed with Epilepsy and Status Epilepticus. Status Epilepticus is a very serious condition and extremely life threatening if not treated aggressively.

With prolonged seizures like Cameron endured there is a risk of brain damage and also death. Cameron had an MRI and also a 24 hour long EEG. The EEG showed a slowing of the brain which is most likely the brain damage from his seizures, but we are incredibly greatfull because Cameron is once again defeating all odds.

Cameron has regressed in several ways, but we and his therapists believe that with time and work we will get him back on track. Cameron could have lost all of the past years work, but he hasn't! He is doing exceptionally well with his sign language and he is still able to pull up and many other things. He was even trying to mimic us doing the sign for 'I love you' yesterday and that is a really tough one for Cameron because he has a lot of difficulty isolating his fingers-especially after his seizures. He isn't doing well when we try to get him to step with us. It seems like he has quite a bit of work to do in that area, but still we are so thankful! Cameron was so tough throughout all of this and remains quite the trooper!

Cameron is now on a seizure medicine called Keppra that he takes orally every morning and evening. We also have to carry around emergency medicine for him called Diastat in case he has a seizure that does not resolve on its on within 2 or 3 minutes.

I want to send a HUGE hug and thank you to every single one of you that have went through this with us and sent your continued prayers. We felt the love even through the scariest moments and it was so special.

Thank you for visiting Cameron's blog. This is where I will be posting updates about Cameron and sharing about this experience as we seek a diagnoses and treatment. If you would like to receive posts straight to your email you can subscribe below.